Sorry I cant help with your problem as i have breast cancer but I know how awful it is waiting and wondering.I hope you have your tests soon and can move forward.

Good luck

Rose xx

Hi Sue,

I know exactly how you're feeling - I went through a similar situation earlier on this year. Please, please don't worry until you know what you are worrying about. I know that is easy for me to say, but what they are doing at the moment is making sure they know exactly wheat they are dealing with. As for them not being able to find you're ovary, the same happened to me in 2007 when I had an internal ultrasound (they eventually found it hiding behind my stomach - I guess it was camera shy!).

I can't give you any medical advice, but I can hopefully hold out a helping hand and lend you an ear. Your situation sounds very similar to mine, although I didn't have any symptoms. I'm not gonna go into too much detail about my situation unless you want me to, as I don't think it's right for you at the moment. Don't despair, don't worry, and remember that there are others who have been through this that are here to help you!

Just shout anytime you need to talk

Yorkie1 xxxx

Hi Yorkie1, I would like to know what they will do next and how long I should expect to wait. I don't want to make a nuisance of myself but I don't want them to put me on a back burner either! The hospital I have to go to doesn't have the best reputation :0(. Could u tell me what happened to you next, it doesn't matter if it was worse case senario as I am expecting bad news anyway as cancer runs in my family. I would just rather now what I am dealing with.

Thanks for your reply

Sue

Hi Sue,

Sorry if I seemed a bit vague before, it's just difficult to know how much to tell someone when you don't want to worry them. Also, every case is different, so what happened to me may not happen to you, but maybe in some way it may help put your mind at ease a little....I hope so anyway.

My case is a bit strange, and to be honest due to a string of circumstances I have been very lucky. However, the main thing for you is that your case is being dealt with. My tumour was found purely by chance, and initially they didn't think it was malignant (I was told that I was the wrong age for ovarian cancer at 34!). I had an ultrasound in March this year, in preparation for being referred for IVF treatment. During the ultrasound they found a cyst on my left ovary. I relayed this information to my fertility nurse, who then rang back a couple of days later to say that it wasn't a cyst, it was a 'mass', roughly 3.5cm's in diameter. I, like you, was asked to come in asap for the blood tests that tested for the CA125 marker (which I believe picks up on most types of ovarian cancer). I had 4 sleepless nights waiting for the results, and was over the moon when thye came back negative. My consultant still had to identify what my 'mass' was, they thought it may be a dermoid cyst. However, the IVF clinic we were going to be referred to asked that it should be left if it was a cyst, but should be removed if it was solid. I had an MRI (I think it was in May or June) which showed my 'mass' was solid. They now thought it was a fibroma (although still couldn't say for sure!) I therefore needed the 'mass' removing, along with my left ovary, as it would be impossible to remove just the 'mass'. My consultant operated after about 6 weeks, so we could get on with our IVF, so I had it removed on 9th August.

About 4 weeks later we got a call from my consultant's secretary to say that he wanted to see us urgently, and that I should take my husband with me!!!! We saw him the next day and the histology report showed that I had had a malignant tumour on my ovary, specifically a granulosa cell tumour. That was the bad news. Now for the good news (and there can be good news!) - the only treatment is removal (which they had already done), I didn't need chemo or radiotherapy, they had caught it very early on (bear in mind I didn't have any symptoms, although my consultant now thinks this may have been why my periods were irregular), and I now need monitoring every few months to make sure it doesn't come back in the other ovary.

They didn't suspect this type of tumour because I am the wrong age (34 years old, and this tumour is mainly found in teenage girls and post-menopausal women), and one of the indicators is a high level of oestrogen, which I didn't have. Also, the test for this type of tumour is apparently very expensive, so they will not test randomly, unless they suspect this type.

This has all seemed a bit surreal to me, as I know that I have had cancer, yet I am no different now than I was before I knew about it. I still have to go to work everyday and do all the household chores, my life hasn't changed one bit.......other than this being the first thing I think of when I wake up and the last thing I think of when I go to bed. I hope in some way my story may give you a little bit of hope that even if it is cancer it doesn't always mean all the nasty stuff we associate with this disease. I may not have gone through the pain and suffering, but I still have the worry that it may come back, but more than anything I am grateful it was found, purely by coincidence.

It's all very scary when they suddenly start doing tests for cancer, but if you actually look at the symptoms for most 'women's problems' it's very hard to distinguish between any of them...................heavy bleeding, abdominal pain, tenderness, bloating, most women suffer that every month!!!! I remember not even feeling that concerned about what they had found, until the nurse told me I had to be tested for cancer, I think I went through every emotion and back again then, and was extremely scared and frightened because then you are dealing with the unknown. I have watched close family members suffer with cancer, but nothing prepares you for medical people suspecting you may have it!!!! I know exactly where you are right now, and those few days of waiting and not knowing were the worst.........but this is your time now to take stock and decide how you are going to deal with this, no matter what the outcome. And above all try to stay positive.

If you need to know anything else, or just want to chat, let me know. I have everything crossed for you and hope everything gets sorted soon. And if your hospital doesn't have a good reputation make sure you are in control of what is happening..............don't let them exclude you!!!! If it's any consolation I don't like my GP's surgery.....last time I saw a GP there I cried :'(

Take care and keep me updated on your results, etc,

Yorkie1 xxxx

Thanks for that yorkie. You had to wait quite a while for your operation didnt you?. I'm so glad u r ok now. I Will keep u updated and it would be good to have someone to chat to when I'm scared. Thanks for that offer.

Hi I have just been diagnosed with a dermoid cyst on My right ovary after a few scary weeks and 2 MRI scans. I have an appt to see a gyneacologist in February to decide my treatment. I had tumour marker blood tests done which came back all clear. I really hope you get good news, make sure you ask lots if questions so you can put your mind at ease. Good luck xx

Hi all, 

thank you you for sharing your stories, I had tummy pains put down to IBS and stress, however had ca125 test which came out higher than expected, had scans yesterday that showed two cysts, one clear the other not. Now got to be referred to find results, feel sick with worry. I am 48 so age is against me. It feels weird discussing this, but as I am pretty much alone makes me feel not alone. I hope all of you are ok, I have looked at lots of treatments and scenarios overnight. All over the place. Thank you for sharing your stories with us. 

Paula xx 

I'm so glad somebody kept this post active .It's been a real eye opener to read everyone's individual experiences and I love the support that everyone has been giving each other - it's beautiful!

I've been waiting for my CA125 results for the past 2 weeks and have an MRI scheduled for this Friday as I collapsed from what (the most bloody condescending) a&e doctors thought was a UTI that had travelled to my kidneys. They weren't wrong about the UTI but it was the tip of the iceberg. Just to be safe my GP arranged a CT scan to see if there were kidney stones left in my kidney, kidneys were fine but they saw a mass which they assumed was a fibroid. Went for an ultrasound and lo and behold the fibroid was actually a  'complex' multilocular 9cm ovarian cyst with suspicious features.

So bloods were taken and here I am. 26 years old, scheduled to wait until 8th May to find out if I have cancer or not. No kids, never been in love, up to my eyeballs in final year dissertation (which is due on the 7th May!) Presentations (due 8th May) and final year exams. I shouldn't even have to think about cancer let alone wait just under a month between blood being taken and waiting for results!

But oddly enough, this is the most calm I've ever felt about a situation in my life. There's no point worrying about what I can't change whether positive or negative. If anything it's making me appreciate everything I do have, family, friends, nature, a soon to be degree and constant internal joy. 

Thank you so much for your positivity ladies, I have just read these posts after finding I have two 7cm dermoids on my left ovary. I have an appt with the gynae on 7th May. Is it normal to have to fill in a questionnaire about my bladder function?

my dermoid was found 3 years ago when I was having a brain lesion investigated (turned out the be a virus phew!) they found one dermoid on an ultrasound and said they would monitor it annually but never did. Fast forward a few years and I found out I have BRCA2 mutation so I opted to have a preventative mastectomy, the surgeon found abnormal cells but no further action was needed as they had been removed. 

So after that scare I decided to chase up the monitoring of the dermoid. During the ultrasound they found that a new one had developed and grown to 7cm as well.

I am worried with my family history but hoping for the best!

Well I hope you are ok and its important to be positive. Just keep pushing for re-scans when necessary - I do feel that only you know when something is wrong with your body. Its been hard enough getting an appointment with my doctor let alone doing anything more. 

I have been lucky to buy into Benerden and they have been absolutely amazing - seen very fast, fast results - however like you have a dermoid cyst - at 5cms - we are now going to monitor it and re-scan in a couple of months - however my last montly cycle caused lots of pain. I am not sure where you live but I have been told about a scanning centre that I can pay to CT scans if I am not happy with waiting. So I may go ahead with this. However what was interest was due to my age was that alot of my IBS and other things are down to menophase. Again a subject that does not get discussed as much as it should. I do hope that you will get positive results and keep thinking that way. You all have been on a long journey 

Paula xx